MS, like many diseases, has symptoms that cannot be seen but do have impact. I want to share a bit about the personal impact of these but, before that, I will l make one thing clear from the start; I am actually very happy that a lot of my issues are invisible! It’s true that I have physical issues such as weakness on the right side, some trembling, problems walking…… the list goes on. But these are nothing to linger on, no matter how annoying they are. I know fellow patients with MS who have far worse physical issues. I know I am lucky to be in pretty good condition.
When they do occur, as physical issues can, people are pretty understanding. They can be seen. Invisible issues are different. They cannot be seen by others but I feel I am more aware of them. I will try to explain a couple of these.
One of the first things I learnt when diagnosed was that the doors to my senses are a bit broken. Like some sort of fashionable nightclub where the entry is very small and loads of people are jostling to get in and where the bouncers have decided to take a night off. This is a simplistic explanation but there is not the room in a blog post to cover all of the medical explanations behind this. I mean, that would be a really boring post! What does this mean for me?
Basically, the filters that all normal people have on their senses are broken and without these filters, the world around me just pours in. Something as simple as a commute can become challenging. A crowded train, all of those voices. Added to my physical instability it makes for hard work. A packed party or a restaurant or cafe can also be challenging for anyone but they can filter their senses and try to focus on one conversation, for example. For me, without those controls, it can feel like I am eavesdropping on every conversation. Even cycling through a forest can be hard work. All those shadows blurring in! Overwhelming! It is not a medical expression, I just like to call it ‘sensory overdrive’.
There also easy responses to this issue. Travel when it is quiet. Use the brakes in the forest, slow down! Job done. Recognise the issues and deal with them. It is also important to try to get on with things. I refuse to close myself off. When in a busy place, the easiest thing to do is step outside for a moment and breath. Let the senses just regroup a little before putting them under strain.
Sensory overload is also something to embrace.
Take just going for a walk in a forest. A passive action when compared to cycling. An absorbing one, though, in that I get my own private, wonderfully chaotic opera. So many birds singing! Some sort of perfect cacophony. I can even pick out the individual voices pick the birds out and count sometimes 30 individual voices in that tangled choir. It’s easy to get lost just standing still.
Listening to music has the same effect. So many layers, twists and turns, so many journeys. A concert can be like some sort of wonderful tidal wave, though I do have to be careful. Focus on the band on the stage and not get distracted by the conversation behind me. Why I really keep meaning to write something about music!
Sensory overdrive can be hard. But, sometimes, it can have benefits. Wonderful, wonderful benefits. That no-one else will ever understand. MS is not, by nature, a positive thing. It can be enriching, though, and I like positives!
Making Myself Understood
The problem with invisible symptoms is that they are, well, invisible. They cannot be seen but impact the individual a lot. This is especially the case with communication issues I have. Verbal communication. Written is not bad, so I will try to explain!
What I write here may be a surprise to anyone who knows me. But it can be just difficult to get the right words out of my mouth when speaking. This is not like a speech impediment although I can sometimes stutter or stumble over a word. My speech is usually pretty clear. It is more making sure the right words come out. I will know what I want to say. Then my mouth opens but nothing happens. I think I sometimes look like a fish of water and can certainly feel like one.
In some cases, words come out but they are the wrong ones. I once went to say something to two colleagues and literally the wrong words came out. Luckily, nothing offensive! In fact, it caused some chuckles though I cannot remember what I said! Then there can be propensity to keep talking whilst I am trying to remember what I wanted to say. Talking in circles and going in all directions. A mess!
This is an element of something well known about those with MS called Cog Fog. This is also the problem that, honestly, I find the most difficult to deal with. It can feel humiliating. Every conversation, every day, with everyone. Friends, family, loved ones, colleagues, the bloke in the shop, someone who said something at the bus stop. All are a challenge. I find myself thinking carefully what to say, forming the words so they are clear. Trying not to slur like I am drunk. Except when I am drunk, of course. People with MS get drunk as well, for the record.
As I said above, I refuse to close myself off. Indeed, like the whole planet, the isolation of the Covid era was just so demoralising. I look forward to seeing people and enjoying their company. That means that I have to learn to live with the challenges of making myself understood. And live with it when it goes wrong. Stop the bad habit of running through every conversation that went wrong. Analysing a conversation to look for one sentence that went wrong.
This is the challenge. I am ill, I don’t mind saying that. The issues that I have are mine. I have lived with them for a good while. So has everyone around me. And, in the nicest possible way, most of them don’t care. I should follow their lead but it is challenging.
This started as a description of all of the invisible symptoms that I have experienced recently. Then I realised it was long enough with two. Much more and it would be sensory overdrive for the reader! This entry has just scratched the surface.
It is simply impossible to cover every aspect of MS and what it does. It would make me miserable to write it all down as well. What is important is the need to carry on. Life is there to enjoy. Simple strategies can help with dealing with sensory overload, for example.
The communication issue, making myself understood, that is more difficult. Something like presentation is easy, just write a script. I just do not want to close myself away. So the risk will always be there of embarrassing myself. Or, I should say, feeling embarrassed. No-one else notices! If they do, do they care?
I should not care, I know that. But it is hard work. Still, it is good to try. Otherwise, I will be very isolated. And I cannot face that.